Saturday, August 22, 2015

When ABA Isn't for You

*Note: ABA can effectively be applied
in so many diverse ways, with any population, across the lifespan, that for
this post I am specifically talking about an intensive ABA therapy program.

ABA therapy isn’t for
everyone.

Did I just say that??

Photo Source: www.merchantcircle.com

For all of the joys,
successes, and breakthroughs that quality ABA therapy can bring about, it is an
unfortunate reality that ABA therapy isn't accessible to all. Especially if the individual needing
services lives in a rural or international location, or is an adult.Oh how I wish this were
all so simple that an individual could demonstrate a need for therapeutic
services, a local provider is contacted, funding is provided, and services
begin. Some states are lucky enough that this really is how services are initiated.
Unfortunately for countless others, it is nowhere near this simple.One of the worst parts of my job is seeing children who very much need help either go
without services, or start and then quickly have to stop services. You always
wonder about those clients or potential clients and how they are doing now. Did
they learn to speak? Are they toilet trained now? Are they still harming
themselves?

There are so many
reasons why quality ABA intervention is not accessible to all, such as: the
supply of knowledgeable and available providers does not meet the demand, the
school systems are overburdened with a growing special needs population as
their funding to help these students gets slashed, and although Autism does not
discriminate there are clear racial disparities amongst who receives access to
treatment. There are far more reasons than I can list here, so I will just name a few:

ABA Haters /Against
behavioral intervention
– So clearly, if a parent/caregiver is against behavioral intervention then
they won’t seek out ABA Therapy. Some parents/guardians feel that ABA is too
harsh, too demanding, too data driven, or robs a young child of a childhood
(since therapy is intentionally intensive). Sometimes parents look into other
treatment options that appear more fun or less intimidating than ABA, give ABA
a “try” and then abandon it, or for some families they may choose not to pursue
treatment at all.

Unable to fit therapy in to your
schedule – I once
worked for a company where I had sibling clients receiving ABA
services. The parents both worked from about 7am-8pm, every day. The
only person in the home besides the children was a nanny who did not speak
English. The company I worked for had a policy that mandated parent
participation, and I was stuck in the unpleasant position of trying to come up
with exciting and creative ways to involve the parents and the nanny, despite
the time and language barriers. Ultimately, the company discharged the family
for lack of participation. ABA Therapy requires active involvement of
stakeholders. Even if services occur at home, we may need to involve the
teachers, and vice versa. I have also been in situations where the family was
so involved in extra -curricular activities (karate, band, boy scouts) that
they were canceling therapy sessions left and right, or always arriving late to
therapy sessions. At that point you have to ask, “Do you really want therapeutic services??".

$$$$/The True Cost – A full time ABA
program with a couple of direct staff and a supervisor can cost thousands of
dollars a month. If your insurance won’t cover it, Medicaid won’t cover it, the
school doesn’t offer anything remotely close to ABA, and you don’t own a
personal money tree, then what are your options? For some families, the only
remaining option is to just go without therapy. Beyond the financial expense,
the “cost” of scheduling your life around ABA sessions can be far too high for some. I have worked
with some families where it wasn’t the financial cost that led them to
terminate therapy, it was the strain on their marriage, the issues with their
other children, or the loss of spontaneity to their life.

No providers – Maybe you have funding for
services, and the time to commit to therapy, but there are no providers anywhere near you. You can try expanding your search because
many ABA professionals will travel to you (goodness knows I do plenty of
traveling!), but keep in mind you may be responsible for the cost of their
travel. Or, maybe the providers in your area all have year long waiting lists. Often the most prestigious/well known providers have super long waiting lists, precisely because their services are so great!

D.I.Y.without oversight –
I once worked
with a family who had difficulty locating providers (or affording them) so they
started working with their daughter themselves. They researched ABA, they read
books, they pored over research articles, and they made lots and lots of flashcards.
Unfortunately, once I started working with their daughter it became clear there
were teaching errors the parents were unaware of. Such as overprompting, issues
with scrolling (a type of guessing) when responding, and a chain of problem
behaviors had been shaped up by the parents giving in to tantrums. My point is
that a program can seem to be working, the child can learn new things and make
progress, but without professional oversight errors or issues can be invisible
to the untrained eye. If you have decided to serve as your child’s therapist, then
please contact a BCBA to oversee the program and to properly train you. To put
it another way, if I read some medical literature and attend some webinars
online, that doesn’t qualify me to perform surgery on my own child. If ABA
therapy looks easy to implement, that’s because you are watching a skilled and
well trained person make a highly complex intervention appear simple.

*Quick Tip: all ABA is not equal. If you DO want ABA
services and for whatever reason cannot access them, please carefully consider
setting up your own program (which includes professional oversight). Here is a
handy resource that should help clear up the differences between quality
ABA and “trying to appear like” ABA.